Angelina Jolie was not the only one to choose a prophylactic mastectomy.
I did, too -- but for different reasons.. (Thank you, Angelina, for making it public. You've given me the courage to write about it for the very first time).
When I was diagnosed with breast cancer almost 25 years ago, the words "prophylactic mastectomy" were not commonly uttered. Breasts that were diseased were removed; otherwise healthy tissue was left intact.
Since then, a lot has transpired. Some (though not all) physicians advise women who have had cancer in one breast to have the opposite one removed, just to be "safe." Many women choose to have prophylactic mastectomies on the opposite breast for psychological reasons: the anxiety that cancer will occur again (though not scientifically based in all cases) is so high to render them unable to deal with the heightened ongoing stress. And we all know what a huge health risk stress can be. The last thing a woman with cancer wants is any more health risks.
Other women opt to have their opposite breast removed so that their bodies feel more symmetrical, or "even." If they opt for reconstructive surgery, the results will be more esthetically pleasing.
And of course, having the BRCA gene mutation, which makes the odds of developing breast cancer climb to dizzying heights, warrants a prophylactic mastectomy, along with other choices like watchful surveillance and/or hormonal therapy.
My decision to have my healthy breast removed came easily to me: I went for my first mammogram after having a mastectomy on my left breast and completing a six-month course of chemotherapy. Just driving into the parking lot for my appointment filled me with overwhelming weakness and dread.
Words and feelings crowded my mind I entered the double doors of the medical building, as clear as it was happening all over again. ("We need to take more views." "Cancer." "Biopsy." "Odds." "Surgery." "Malignancy.")
When the technician placed my right breast into the machine and slowly compressed it, I felt faint and numb. When she left the room and came back in a few minutes later to take more views, bile rose in my throat. "Oh, no," I thought "I can't go through this again." My children's young faces invaded my sight. The poison words surfaced again.
I waited. I paced. I tore at my ragged cuticles with my teeth. Twenty minutes felt like a full day. It turned out that there was not cancer in my opposite breast, but by the time I found that out I had already decided.
It took a lot of searching to find a doctor who would understand. One doctor dismissively looked me square in the eye and said, "I DON'T remove healthy tissue." I felt ashamed. Another told me there was no scientific basis for my request. I felt disappointed. Others wouldn't even see me. I felt angry.
In case you're wondering, I did get tested for the BRCA gene mutation. I was young when I developed breast cancer (34) and I was searching for a reason. I am of Ashkenazi descent (the mutation occurs more commonly in certain populations, and this is one of them). It turns out I did not have the defect. But that would not change my decision.
A few months later, I found an empathic, experienced reconstructive surgeon who understood how I felt. He did not judge. He did not question. He got it. He would reconstruct my lost breast. He would prophylactically remove my other breast and reconstruct it at the same time.
The healthy tissue was biopsied. There were no cancer cells present.
Peace of mind is priceless.
Gathering your health information and getting organized before your appointment are the key steps to ensuring a productive meeting with your doctor. This is especially important if you're seeing multiple doctors or are meeting with a new physician for the first time.
Make sure the doctor you're seeing has copies of your latest X-ray, MRI or any other test or lab results, including reports from other doctors that you've seen. In most cases, you'll need to do the legwork yourself, which may only require a phone call to your previous doctor's administrative staff, asking for it to be sent, or you may need to go pick it up and bring it to the new office yourself.
Make a list of all the medications you're taking (prescription drugs, over-the-counter medications, vitamins, minerals and herbal supplements) along with the dosages, and take it with you to your appointment. Or, just gather up all your pill bottles in a bag and bring them with you.
Your doctor also needs to know about any previous hospitalizations, as well as any current or past medical problems, even if they are not the reason you are going to the doctor this time. Genetics matter too, so having your family's health history can be helpful. The U.S. Surgeon General offers a free web-based tool called <a href="http://familyhistory.hhs.gov" target="_hplink">"My Family Health Portrait"</a> that can help you put one together.
Make a written list of the top three or four issues you want to discuss with your doctor. Since most appointments last between 10 and 15 minutes, this can help you stay on track and ensure you address your most pressing concerns first. If you're in for a diagnostic visit, you should prepare a detailed description of your symptoms.
The best advice when you meet with your doctor is to speak up. Don't wait to be asked. Be direct, honest and as specific as possible when recounting your symptoms or expressing your concerns. Many patients are reluctant or embarrassed to talk about their symptoms, which makes the doctor's job a lot harder to do. It's also a good idea to bring along a family member or friend to your appointment. They can help you ask questions, listen to what the doctor is telling you and give you support.